Look Forward issue 165 - August 2018

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Look Forward Issue 165

August 2018 Registered Charity No.1153851

Inside Retina UK update Page 3 Falkirk Information Day Page 4 Virgin Money London Marathon Page 5

A busy summer!

We’ve had a great year so far, with this summer being one of the charity’s busiest ever! As well as making progress with our new name and image (more about which you can learn in this edition of Look Forward), our annual conference has taken place, we’ve held Information Days in Birmingham and Leeds, our trek to Mont Blanc proved a real highlight and countless fundraisers have taken place up and down the country. The next few months are likely to be equally busy and productive; a fantastic gala dinner is taking place in October, Tough Mudder events are taking place and we’ll of course be planning for 2019!

Medical Advisory Board appointment Page 7 Challenge Yourself Monthly Page 9 Giving in memory Page 10 My Guides Page 13 CRISPR news Page 18 Big Give Christmas Challenge Page 20

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NEWS

Letter from the Chief Executive Tina Houlihan Welcome to the summer 2018 issue of Look Forward. As I write this, we have been enjoying a prolonged period of sunny weather - as enjoyable as this is for many, I am of course aware that dazzling sunlight can be unhelpful for many in our community; I hope this bright spell hasn’t proved too uncomfortable.

As ever, lots has been going on across the country - from the wonderful Hope to Seaview fundraiser run by trustee Colin McArthur on the Isle of Wight to our recent Information Day in Leeds, we’ve been kept very busy!

Our annual conference in June proved a great success, and we were fortunate to attract some truly exceptional speakers to present to our delegates. I was thrilled by the RP Fighting Blindness funds medical research into inherited retinal dystrophies and offers a range of information and support services to patients and their families.

positive feedback we’ve received and the team at head office has already begun to make plans for next summer’s conference! Watch this space.

Please do feel free to get in touch with me on chiefexecutive@rpfightingblindness.org.uk if you have any feedback or comments about the charity; we always welcome your thoughts.

Thank you for your ongoing support.

Do you follow us on Facebook and Twitter? Search for RP Fighting Blindness on Facebook to find our Page and various groups, and follow us on Twitter on @RPFightingBlind for the latest updates and news about the charity.

PO Box 350 Buckingham, MK18 1GZ E: info@rpfightingblindness.org.uk T: 01280 821334 (OFFICE) T: 0845 123 2354 (HELPLINE)

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NEWS

Retina UK Update We’re delighted to report the Charity Commission has formally accepted our request to change the name of RP Fighting Blindness to Retina UK, following our consultation process with members and the Extra Ordinary General Meeting in May. This is an important step in the statutory process of changing a charity’s name.

We’re running down stocks of RP Fighting Blindness materials and towards the end of the year these will be replaced with new Retina UK branded versions. A full review of all our materials and resources is taking place and we’re developing a suite of new information and fundraising collateral for members and the general public.

A new website is also being developed with revised and updated content to reflect Retina UK’s fresh modern image, which is being designed to be more easily navigable and user-friendly. We intend to further develop this new website in 2019 and build in more functionality and features.

This is a very exciting time for the charity, and we’re delighted so

many of our supporters are enthusiastically welcoming this change. There’s a lot for us to prepare in the run up to the full adoption, but our trustees and the office team believe the effort is more than worth it!

Chief Executive Tina Houlihan commented, “2018 has proved a real turning point for our charity - the change we are undergoing will help us reach more people than ever before, and strengthen our community. I’d like to thank everyone who has supported us in this endeavour, and I look forward to us starting 2019 with our fresh new image.”

Should you have any queries about the reasons behind our name change or the ongoing process, please feel free to get in touch with us. You can call 01280 821334 or email tom@rpfightingblindness.org.uk

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EVENTS

Falkirk Information Day We are pleased to announce we will be holding an Information Day focusing on Inherited Retinal Dystrophies (IRDs) and syndromes, including retinitis pigmentosa and Usher syndrome in September in Falkirk.

This event will be held on Monday 10th September between 10:00am and 4:00pm at Forth Valley Sensory Centre, Redbrae Rd, Camelon, Falkirk, FK1 4DD. The RPFB Information Day programme reaches out across the UK and visits different regions throughout the year.

anyone interested learning more about this important group of eye conditions.

Registration is required and places are limited, so please do contact us to confirm your place!

If you would like to attend the event or you have any questions, please contact the RPFB office for further details by calling us on 01280 821334 or emailing services@rpfightingblindness.org.uk.

Keep up to date with our latest news, learn about upcoming information events and hear about This is a great opportunity to find exciting fundraisers by subscribing out more about IRDs; the event will to the RP Fighting Blindness include presentations from medical e-Bulletin - it’s an easy way to stay professionals, you’ll learn about the on top of everything that’s going on latest technology products, have with the charity delivered to your the chance to meet with other local inbox every month. You can sign up sight loss charities as well as for the RP Fighting Blindness learning more about the work of RP e-Bulletin by visiting our website Fighting Blindness. homepage and clicking ‘contact’ or by calling 01280 821334.

This event is free of charge and is You can also sign up for other open to anyone affected by an communications, including inherited retinal dystrophy, their volunteering alerts, in the same way. family and friends, professionals working with affected families and

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Virgin Money London Marathon

28th April 2019 GUARANTEED PLACES AVAILABLE For more information go to our website, contact Emily Webb on 01280 815900 or email emily@rp ghtingblindness.org.uk

Registered Charity No. 1153851 www.rp ghtingblindness.org.uk

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NEWS

Trustee Farewell We’re sorry to report valued trustee Mr Stephen Jones stood down from the board at the Annual General Meeting in June. Stephen has a long association with the charity, and has helped it grow and develop into an internationally-respected medical research and patient support organisation.

Stephen joined the board in October 2010, having been a longstanding member of the charity and supporter of our work, following his son's diagnosis with RP in 1987. Prior to being made a trustee, he held various positions with the charity including that of a contracted adviser, during which time he wrote and contributed to the implementation of our first five year development plan.

Stephen was a key member of our board. He acted as our charity’s representative for Retina International and was also a member of its Management Committee.

Chief Executive Tina Houlihan thanks Stephen for his many contributions to our work, “Stephen has seen our charity grow in scope and size, and has been a key member of the board for many Stephen was active in many years. He will be sorely missed on different areas of work; from the board of trustees and I know I corporate fundraising to building speak on behalf of everyone at the our international reputation. He charity when I warmly thank him for was a driving force in strengthening his advice, expertise and guidance. our public profile at home and Without the dedication of people abroad, and worked extensively like Stephen charities like ours with senior staff at the charity over simply could not operate.” many years to raise awareness of our work in so many areas.

We wish Stephen every happiness and success for the future, and With his background in would like to thank him for the organisational strategy, business countless contributions he has affairs and financial development, made to the charity.

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NEWS

Medical Advisory Board Update We’re delighted to report Prof Susan Downes of Oxford University Eye Hospital has consented to join our Medical Advisory Board in the capacity of chair of the board. She is taking over the role from the outgoing chair Prof Andrew Lotery, who has completed his three year term and so ends his rotation.

knowledge and skills proved highly valuable. She has spoken at various RPFB conferences and other events, and is a familiar face to many members.

Chief Executive Tina Houlihan commented on the appointment, “I’m pleased to welcome Prof Downes back to our MAB in the Professor Downes MB ChB MD capacity of chair. The importance of FRCOphth qualified in 1986, did her the work of our Medical Advisory post training fellowship and Board cannot be underestimated; medical doctorate (inherited retinal it’s only thanks to the work of these degeneration) at Moorfields Eye expert volunteers that we are able Hospital and the Institute of to administer our grants Ophthalmology, London, and took programme and determine which up her Consultant post as a are the very best scientific Medical Retina Consultant at the research projects to fund.”

Oxford Eye Hospital, John Radcliffe, We’re sure you’ll Oxford in 2000, and is an Associate want to join us in Professor at the University of thanking Prof Oxford. She specialises in inherited Downes for retinal dystrophies and age related taking up this macular degeneration. She leads important the Eye research group Oxford position within (ERGO), which supports a large the organisation, number of studies, the majority of Prof Susie Downes, and thank Prof Consultant Ophthalmic which relate to inherited retinal Lotery for all his Surgeon dystrophies. hard work on our behalf over the We’re thrilled Prof Downes has past few years. agreed to join the Medical Advisory Board in capacity of chair; she was a member a few years ago and her www.rpfightingblindness.org.uk

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Helping People with Low Vision Gain Greater Independence

P U N G SI !

Y A D TO

Making a real difference in day-to-day life: Be aware of your surroundings Socialise Reading Enhance colour For work & hobbies

If you are a patient or caregiver interested in one of our demonstrations, we want to hear from you. Please visit us at one of the following events: Clinics London, Oxford & Manchester Special events Falkirk - 10th Sept 2018 Leeds - 26th Sept 2018 Swansea - Autumn 2018

01865 580255 • care@oxsight.co.uk • oxsight.co.uk Get in touch to request additional information or sign up for a demonstration

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Challenge of the Month Take part in the brand new Challenge of the Month and enjoy new activities while raising money for RP Fighting Blindness! We have big plans for this new campaign, with challenges planned from now all the way through 2019! Below are the challenges coming up.

2018 Auction of Promises August Sim specs September O ce Olympics October Name that tune November Danceathon December 2019 Juicey January

Just Dance July

Flipping February

Afternoon Tea August

Marathon March

Swimming September

Arty April

On your bike October

Musical May

Non-uniform November

Jogging June

Deck the Halls December

To nd out more about any of the challenges, please visit our website www.rp ghtingblindness.org.uk, email fundraising@rp ghtingblindness.org.uk or call us on 01280 815900.

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FUNDRAISING

Give in memory of a loved one If you have lost someone close to you, you could honour their memory and help their legacy live on by donating to our important work funding research and supporting those with inherited sight loss.

Whether you choose to collect donations at a funeral or memorial, set up an online donation page, make a contribution direct to RP Fighting Blindness, or even take on a sponsored challenge in celebration of their life, our team is here to help you every step of the way.

If you plan to hold an event or collect donations at a funeral or memorial service, we can provide everything you need, including leaflets, collection boxes and gift aid envelopes, which allow us to collect an additional 25% per donation.

to donate will have the opportunity to write a personalised message, share the page on social media, and also gift aid their donation.

If you would like to send us any funds you have raised, please post these to RP Fighting Blindness, PO Box 350, Buckingham, MK18 1GZ. Make sure you enclose a note letting us know the reason for the donation, or contact us to explain the circumstances.

To discuss any aspect of in-memory giving, or let us know about any donations you are planning or events you are organising, call our friendly fundraising team on 01280 815900.

We are so grateful to everyone who chooses to support our work; your generous contributions help us to deliver vital information and support and fund the most Websites such as promising medical research into www.justgiving.com make it easy to set up an online donation page in inherited sight loss. For more information on how you can your loved one’s memory, with contribute, visit our website or call donations coming directly to RP us on 01280 821334.

Fighting Blindness. Those wishing 10

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RESEARCH

Usher syndrome research project – an update Thanks to support from our wonderful community, including those who participated in the Big Give Christmas Challenge last year, we have been funding a three-year research project into non-viral gene therapy as a potential treatment for Usher syndrome, led

by Dr Mariya Moosajee.

The start of the project was delayed slightly to allow a post-doctoral research associate to be recruited, so we now expect our first report from the team in February next year. However, Dr Moosajee has been kind enough to give us a brief update on progress so far. The team has generated ‘complementary DNA’ (cDNA), which is a synthesised version of the instruction parts of the USH2A gene. This will enable them to insert it into the non-viral vector delivery system.

A person affected by Usher syndrome has volunteered to have a skin biopsy, so that their skin cells can be converted into stem cells. These stem cells can be manipulated to become cells of any type of tissue, including retinal

Dr Mariya Moosajee

cells, so that the effects of USH2A can be monitored and the impact of any therapies, particularly the non-viral USH2A gene therapy can be evaluated.

We look forward to updating you all again after we receive the team’s first report next year It’s Usher Syndrome Awareness Day on 15th September. If your family is affected by the condition we recommend you visit the Usher Kids UK website at http://www.usherkidsuk.com to learn more and connect with other families.

www.rpfightingblindness.org.uk

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EVENTS

RPFB Annual Conference Saturday 23rd June saw our annual conference take place in London.

This year’s event was hosted by One America Square in Tower Hill.

We were joined by some leading scientific speakers, who presented on various strands of research and ongoing projects. We heard from Dr Mariya Moosajee, Dr Stephen Hicks, Dr Laura Brady, Prof Susan Downes and Prof John Marshall MBE. Sculptor and artist Victoria Claire was this year’s inspirational speaker, and Prof Robin Ali joined our RP Question Time panel in the afternoon.

We also brought back our popular information workshop sessions for a second year - this year’s topics to choose from were Charles Bonnet Syndrome, smart glasses technology and genetic therapy.

The day ran smoothly, other than a fire alarm shortly before lunch!

Luckily it was a false alarm and the day’s programme was back on track in no time.

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We had almost 200 people in attendance, which makes our annual conference the biggest gathering of the RP community in the country. We were delighted to welcome many new faces to this year’s event, as well as lots of familiar ones. Our exhibition was our largest ever and we showcased some new technologies and stands for the first time.

We’d like to thank everyone who attended, and of course a big thank you must go to all the speakers and workshop facilitators who generously gave their time and helped make the day possible!

Special thanks to event sponsors OxSight and Nightstar for their contribution.

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ARTICLE

My Guide Case Study Dolores Henry is a My Guide client, whose independence was greatly increased with the help of her trained sighted guide My Guide volunteer. Eighteen months ago, Dolores barely had the confidence to leave her home; now, thanks to support from Guide Dogs’ innovative My Guide service, she has regained much more of her independence.

In the following years she worked with professionals to learn how to use a long cane but still relied heavily on others and by the end of 2015 she was essentially housebound.

Dolores’s mother came into contact with German measles while pregnant and, as a result, Dolores was born with problems with her vision. In 1989 her sight worsened; “I was away in London when I started to get floaters in front of my eyes,” she recalls. “I went completely blind almost overnight which was very scary. It was a big change in my life I couldn’t go back to work and I had to rely on my other senses and other people to do everyday tasks.”

“It really changed my life. I now have the confidence to travel on my own and use my long cane to explore parts of the city I didn’t even know existed! I couldn’t recommend the My Guide Service enough.”

Dolores was referred to My Guide, as it was felt she would benefit from getting out with a trained volunteer.

“After waiting for a few months to find a match, I was introduced to my volunteer Susan. I didn’t really know The My Guide service trains what to expect but very quickly and volunteers to become sighted guides, allowing them to help people after a few outings there was no with sight loss get out of their homes stopping us! We went clothes and back into the community. The My shopping, for lovely walks and tried out lots of cafes, I also learned to Guide service is provided free of remember lots of new routes!” charge.

An operation gave Dolores back some hazy vision in her left eye.

Guide Dogs is looking to provide more opportunities to support service users across the UK to ensure they retain or regain their mobility and independence. For more information you can visit www.guidedogs.org.uk, email myguide@guidedogs.org.uk or call on 0345 1430229.

www.rpfightingblindness.org.uk

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RESEARCH

Increasing eye cells' ability to process misfolded proteins Researchers at Duke University in California believe they have developed an approach to treat retinal conditions including retinitis pigmentosa, all of which create misfolded proteins that cells in the eye cannot process. The scientists have shown that boosting the cells' ability to process misfolded proteins could keep them from aggregating inside the cell. They devised and tested the strategy in mice, significantly delaying the onset of blindness.

The team’s study (Increased Proteasomal Activity Supports Photoreceptor Survival in Inherited Retinal Degeneration) appears in Nature Communications.

“Inherited retinal degenerations, affecting more than two million people worldwide, are caused by mutations in over 200 genes. This suggests that the most efficient therapeutic strategies would be mutation independent, i.e., targeting common pathological conditions arising from many disease-causing mutations.

Previous studies revealed that one such condition is an insufficiency of the ubiquitin-proteasome system 14

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to process misfolded or mistargeted proteins in affected photoreceptor cells,” write the investigators.

“We now report that retinal degeneration in mice can be significantly delayed by increasing photoreceptor proteasomal activity.

The largest effect is observed upon overexpression of the 11S proteasome cap subunit, PA28α, which enhanced ubiquitinindependent protein degradation in photoreceptors. Applying this strategy to mice bearing one copy of the P23H rhodopsin mutant, a mutation frequently encountered in human patients, quadruples the number of surviving photoreceptors in the inferior retina of six-monthold mice. This striking therapeutic effect demonstrates that proteasomes are an attractive target for fighting inherited blindness.”

Their technique potentially could be used to prevent cell death in other neurodegenerative diseases, such as Huntington's, Parkinson's, and Alzheimer's, said Vadim Arshavsky, Ph.D., senior author of the paper and Helena Rubenstein

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RESEARCH

Foundation Professor of Ophthalmology at the Duke University School of Medicine.

The Duke team collaborated with colleagues from the California Institute of Technology. They focused on the proteasome: machinery inside all cells that

proteasome lids retained four times the number of functional retinal cells by adulthood than mice with the same form of retinitis pigmentosa, which went blind as adults. The lids were introduced genetically in the line of lab mice. In humans, lids could potentially be added through gene therapy or drug compounds.

"If you can retain four times the number of the functional cells in the eye, that would mean decades more vision in a human patient," Dr. Arshavsky said. "It's not a complete cure, but it's a tremendous delay. degrades misfolded proteins. Dr. This type of treatment has the Arshavsky compares the barrelpotential to defer the onset of shaped structure to a paper blindness beyond the human shredder, with the cutting elements lifespan." hidden inside.

Misfolded proteins must pass through a "lid" on the shredder to be processed, but cells in diseased mice do not have enough lids, enabling the build-up of the damaged proteins. Instead of trying to alter the shredders, Dr. Arshavsky and his team genetically increased the quantities of lids for the shredders, allowing cells to process more misfolded proteins.

Did you know, as well as providing information about inherited sight loss and related syndromes, the RP Fighting Blindness website is updated with news of research we are funding, as well as that of other institutions, organisations and commercial companies? Check our website regularly to keep up to date with the latest research news from around the world.

In trials, mice with added www.rpfightingblindness.org.uk

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ADVERTISEMENT

The Argus® II System “When I started to go blind I didn’t want to live anymore. Now I have hope.”

Jeroen Perk, 39, works for the Netherlands’ Customs & Excise. He is totally blind due to RP. Jeroen was the second person in the Netherlands to be implanted with the Argus II Retinal Prosthesis System, also known as “the bionic eye”. The surgery took place in June 2013.

Since then, Jeroen has been using Argus II to help him navigate outdoors.

and the shape and size of that person. I can chat to them, if I want.

“On holiday in Norway, it was great to see the contours of the mountains. Also I loved seeing the very high dramatic waterfalls. I saw them quite clearly.

“Life is beautiful when you make the most of it. Now, I am happy.”

The Argus II System employs electrical stimulation to bypass defunct cells and stimulate remaining viable retinal cells inducing visual perception in blind individuals.

For more information about Argus II and the NHS, please call UK freephone 0800 520 0925.

Life looks good: Jeroen and Nanda

“Argus II helps me to be more confident generally in life. With the system, it is much easier for me to get around outside because I can know where obstacles and road crossings are.

“Socially, if I go into a restaurant, I can perceive whether there is someone already sitting at a table,

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You can view a video about Jeroen using the Argus II by visiting bit.ly/2IzCsMz and you can follow news and information about Second Sight on Twitter by following @Argus_BionicEye.

This advertisement is paid for by the company and its inclusion in this newsletter does not imply any preferential endorsement by RP Fighting Blindness.

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Thank you to all our fundraisers!

We wouldn’t exist without the support of our fundraisers as we rely entirely on voluntary donations, and so far this year we have had some brilliant people taking on challenges, organising events and giving in celebration for RP Fighting Blindness!

In March we had 14 runners take part in the brand new half marathon in London, the Big Half.

Between them they have raised nearly £9,000!

Also in March was the Bath Half Marathon. Unfortunately the event was cancelled due to bad weather, however our four runners still managed to raise over £3,000!

The Virgin Money London Marathon took place on 22nd April, and our team of 19 runners did incredibly well, especially considering the hot weather! They have raised over £45,000 between them so far!

We have also had people taking part in events such as Tough Mudder, skydives, Ultra Runs, other running events, as well as Three Peak Challenges! Our Isle of Wight local group also put on the fundraising walk “Hope to Seaview”, which has raised over £10,000!

This year’s trek was the Tour of Mont Blanc, and all of the participants completed the challenge admirably! They’ve done fantastically well with their fundraising too!

As well as the challenge events, people have been busy organising all sorts of other activities. To date there have been dining in the dark events, music events, bucket collections and bottle stalls, all of which have done really well!

Thank you so much to everyone who has been involved in fundraising for RP Fighting Blindness so far this year! You’re all amazing!!

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RESEARCH

Researchers develop a new CRISPR technique Researchers from Columbia University have developed a new technique for the powerful gene editing tool CRISPR to restore retinal function in mice with retinitis pigmentosa. This is the first time researchers have successfully applied CRISPR technology to a type of inherited disease known as a dominant disorder.

Dr Stephen H. Tsang, and his colleagues sought to create a more agile CRISPR tool so it can treat more patients, regardless of their individual genetic profile. Dr Tsang calls the technique genome surgery because it cuts out the bad gene and replaces it with a normal, functioning gene. Dr Tsang said he expects human trials to begin in three years.

researchers. In autosomal dominant disorders, the person inherits only one copy of a mutated gene from their parents and one normal gene on a pair of autosomal chromosomes. So, the challenge for CRISPR-wielding scientists is to edit only the mutant copy without altering the healthy one. In contrast, people with autosomal recessive disorders inherit two copies of the mutant gene. When two copies of the gene are mutated, treatment involves a more straightforward, one-step approach of simply replacing the defective gene.

Dr Tsang and colleagues have come up with a strategy to treat autosomal dominan conditions. It allowed them to cut out the old gene and replace it with a good gene, without affecting its normal Since it was introduced in 2012, the function. This so called “ablategene editing technology known as and-replace� strategy can be used CRISPR has revolutionised the to develop CRISPR toolsets for all speed and scope with which types of mutations that reside in scientists can modify the DNA of the same gene and is not exclusive living cells. for a type of mutation. This is especially helpful when many types Conditions like autosomal of mutations can lead to the same dominant retinitis pigmentosa disorder. For example, any one of present a special challenge to 18

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RESEARCH the 150 mutations in the rhodopsin gene can result in retinitis pigmentosa. Because Dr Tsang’s technique can be applied in a mutation-independent manner, it represents a faster and less expensive strategy for overcoming the difficulty of treating dominant disorders with genome surgery.

combined this genome surgery tool with a gene replacement technique using an adeno-associated virus to carry a healthy version of the gene into the retina.

Another advantage is that this technique can be used in non-dividing cells, which means that it could enable gene therapies that focus on non-dividing adult cells, such as cells of the eye, brain, or heart. Up until now, CRISPR has been applied more efficiently in dividing cells than non-dividing cells. Dr Tsang used an objective vision test to evaluate the mice after treatment to show a Instead of using one guide RNA, Dr. significant improvement in retinal Tsang designed two guide RNAs to function. An electroretinogram is treat autosomal dominant retinitis typically used to evaluate retinal pigmentosa caused by variations in health in humans. It tests the the rhodopsin gene. Rhodopsin is health of the retina much like an an important therapeutic target electrocardiogram (EKG) tests the because mutations in it cause health of the heart. about 30 percent of autosomal Previous CRISPR studies for retinal dominant retinitis pigmentosa and diseases have relied on a less 15 percent of all inherited retinal objective measure that involves dystrophies. This technique allowed evaluating how often the mouse for a larger deletion of genetic code turns its head in the direction of a that permanently destroyed the light source. Dr Tsang used targeted gene. Dr. Tsang found that electroretinography to show that using two guide RNAs instead of retinal degeneration slowed in one increased the chance of treated eyes compared with disrupting the bad gene from 30 untreated eyes. percent to 90 percent. They

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FUNDRAISING

The Big Give Christmas Challenge The Big Give Christmas Challenge 2018 - double the impact of your donation.

As many of you will know, RP Fighting Blindness participated in the Big Give Christmas Challenge for the first time last year, raising an amazing £25,319 for Dr Moosajee’s project exploring nonviral gene therapy as a possible treatment for Usher syndrome.

This year the campaign will run from midday on 27th November to midday on Tuesday 4th December, and we are aiming to raise even more money to invest into our pioneering research projects.

We’re delighted that we have already secured part of our match funding pot thanks to a generous funder and donor, and we are currently waiting to hear if we have been chosen by one of the Big Give’s Champions.

We will share more details in the coming months and in November’s 20

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edition of Look Forward, so watch this space. This is a unique opportunity to make a donation towards research into inherited sight loss and have it doubled at no additional cost to you!

“The Big Give Christmas Challenge is a wonderful way to support the charity at Christmas time,” commented Tina Houlihan, Chief Executive. “We enjoyed great success with last year’s Christmas Challenge, and we’d love to build on that and raise even more for pioneering scientific research this year.” (see page 11) If you have any questions about the campaign at this stage please contact Deborah on 01280 815900 or email deborah@rpfightingblindness.org.uk.

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INFORMATION

Privacy and data protection Many of you will have heard about the new General Data Protection Regulation (GDPR), which came into force in May this year.

The team at RP Fighting Blindness takes your privacy very seriously, and you can find out more about how we process and use your personal data by reading our Privacy Notice.

You will find a link to this on the homepage of our website www.rpfightingblindness.org.uk but we can also email you a copy, or send a large print or audio version in the post.

Just call us on 01280 821334 or email info@rpfightingblindness.org.uk.

Join Team RP for Tough Mudder 2018!

Multiple dates and locations available! ÂŁ25 Registration Fee ÂŁ300 Minimum Fundraising Target If you want to raise money for RP Fighting Blindness in 2018 while undertaking a fantastic physical challenge, look no further than Tough Mudder!

Tough Mudder is a 10-12 mile obstacle course designed by the Special Forces to test all-around strength, stamina, teamwork, and mental grit.

Join individually or as a team!

Contact Emily for more information on 01280 815900 or email emily@rp ghtingblindness.org.uk

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eyes ON THE FUTURE

Gala Dinner

10 th October 2018 - The Park Lane Hotel, London Raising funds to support research against LCA, a severe degenerative eye condition in children help children see for longer Supported by:

Sponsored by:

Share the love!

Donating shares is a great way to support our work. Even very small shareholdings can be converted into much needed funds through the wonderful ShareGift scheme.

If you want to donate shares worth less than £500, visit www.sharegift.org and mention RP Fighting Blindness when donating your shares. We will then become eligible for a donation – we’ve received £8,000 so far!

If you have shares worth £500 or more, please contact our Senior Fundraising Manager, Deborah on 01280 815900 or email deborah@rpfightingblindness.org.uk to arrange transfer.

Thank you so much for your support!

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ARTICLE

A helping hand with taxes Did you know that RNIB has a tax team that supports blind and partially sighted people with tax, tax credits and HMRC issues across the UK? The team is supported by HM Revenue and Customs (HMRC).

The Tax Team helps people to claim extra tax allowances, such as Blind Person’s Allowance and Marriage Allowance, which can reduce your tax bill and these can be transferred and backdated. The tax service is free, confidential and available to people with sight loss, regardless of their age or income. It can arrange help with form-filling, completing tax returns, claiming a tax refund and resolving problems.

It also advises which products and building work are VAT-free.

hearing loss, dementia or living in a care home. Factsheets in different formats are available with information on tax allowances and useful contacts.

HMRC has introduced the Personal Tax Account, which allows you to manage your affairs with HMRC online. If you can’t get online however or the issue is more complex, the team can help arrange for an adviser at HMRC to come to your home or meet you locally.

Since the service launched in 2011, the Tax Team has helped over 34,000 people and identified £3million in extra tax allowances and tax credits.

Want to learn more? You can contact RNIB’s tax team by telephone on 0345 330 4897, emailing tax@rnib.org.uk or to find out more about the service visit rnib.org.uk/tax.

The service has access to a dedicated team within HMRC for people who need extra help with their tax and credits and helps customers who are unable to speak to HMRC directly because of

Did you know the RP Fighting Blindness website provides signposting to services and resources provided by other organisations that you may find helpful?

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We are so grateful for all dona ons to our work.

Please make your selec ons below and post the form back to RP Figh ng Blindness, PO Box 350, Buckingham, MK18 1GZ, or, if you prefer, call 01280 821334 or donate online at www.rp gh ngblindness.org.uk. Thank you.

I enclose my cheque for £ .............. payable to “RP Figh ng Blindness”.

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Last three numbers on the reverse of the card: If you would like to set up a Direct Debit, please visit our website www.rp gh ngblindness.org.uk or call the o ce on 01280 821334.

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If you gi aid your dona on, the charity will receive an extra 25p for every £1 that you give!

I con rm that I have paid or will pay an amount of Income Tax and/or Capital Gains Tax for each tax year (6 April to 5 April) that is at least equal to the amount of tax that all the chari es or Community Amateur Sports Clubs (CASCs) that I donate to will reclaim on my gi s in that tax year. I understand that other taxes such as VAT and Council Tax do not qualify. I understand that the charity will reclaim 25p of tax on every £1 that I give.

Signature: Start date: Should you wish to opt out of some or all communica ons from us, you can do so at any me. Just call us on 01280 821334 or email info@rp gh ngblindness.org.uk Registered Charity Number 1153851